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Epidemiologic surveillance indicates an increased susceptibility to obesity among children with special health care needs (SHCN) in comparison to children without. The present study investigated this disparity in weight severity between both groups, with a focus on the provision of obesity management counseling by physicians. This study consisted of a retrospective medical record review that acknowledged the effect of patient-provider interactions on health behaviors and risk perceptions. An independent sample t test compared the incidence of clinician-initiated obesity management counseling received by children with SHCN to that which was received by children without SHCN. This t test revealed a statistically significant difference between the weight management frequency received by youth with SHCN (M = 1.0, SD =.46498) and the weight management frequency received by youth without SHCN (M = 2.0, SD = .74975), t(100) = 7.826, p = .000, α =.05 over a 2-year timeframe. Bivariate correlation analysis validated a correlation between weight severity among children with SHCN and the incidence of clinician-initiated obesity management counseling. The results indicated a small but significant association between weight severity and weight management frequency among children with SHCN, r(50) = .287, p = .044, α =.05. These results support the need for a transformation in the delivery of preventive health services for children with SHCN, such as providing clinician-based obesity management strategies and increasing access to validated diagnosis-specific preventive health screening tools. These results promote positive social change by informing efforts to improve health outcomes and decrease health disparities experienced by people with SHCN.

Children with a chronic illness or disability can encounter many difficulties throughout their lifetimes. Respite care through therapeutic summer day camps is a service used to relieve the physical and mental strains placed on caregivers while also creating unique opportunities to benefit the child. There are gaps in the literature surrounding therapeutic camps and their benefit for the family and their ability to manage the child’s special health care need. The purpose of this study is to determine how respite care in the form of a therapeutic summer day camp for children with special needs impacts a family’s ability to manage their child’s special health care needs within their family. This research study used mixed methodology combining quantitative data collection through pre- and postsurveys and qualitative data collection through interviews that work to answer questions relating to the effects of a therapeutic summer day camp on parents’ perspective and management of their child’s condition. The theoretical framework used to guide the study is the Family Management Style Framework. Twenty-two parents completed The Family Management Measure that was administered prior to and at the conclusion of an 8-week therapeutic summer day camp program. Qualitative interviews with 11 parents helped to better understand specific interventions and experiences of the therapeutic camp that benefitted their child and family. Although the quantitative analysis did not yield statistically significant changes in the family’s ability to manage their child’s condition as a result of attendance at the camp, the qualitative interviews demonstrated robust evidence that the camp provided meaningful experiences for the campers and parents while alleviating stress within the family. Themes that emerged from the interviews include: (1) Family-Child themes of loss of normalcy, relationships affected, increased stress, family adaptations, and love for the child; (2) Camp-Child themes of meets individual needs, creates happiness, and behavior changes; and (3) Camp-Parent themes of improved perception of the child, decreased stress, parent involvement with staff, and need for specific environment at camp. Implications of the results are discussed, along with recommendations for future research.

Background: Transition readiness is a critical set of skills that youth must acquire as they prepare for managing their healthcare in adulthood, for both youth with and without special health care needs (SHCN). Currently much of the literature pertaining to transition readiness focuses youth with special health care needs (YSHCN). However, all youth, including those without special healthcare needs, should develop skills for managing their health as they transition into adult healthcare. Additionally, youth from rural areas may face additional barriers to acquiring the skills for transition, yet a paucity of information on transition readiness among this population. Objective: We examined transition readiness among youth in two rural high schools in South Central Appalachia. Specifically, we examined differences in readiness among youth with and without SHCN. Design/Methods: We used data from a 2016 school-based survey of adolescents ages 16-18 at two high schools in rural South Central Appalachia Tennessee (n = 437). Using a validated screener, we identified 23% of youth as YSHCN. Compared to healthy youth, a greater proportion of YSHCN were female (68% vs. 49%) or non-Hispanic white (96% vs. 83%). We assessed differences in transition readiness as measured by four subscales (managing medications, appointment keeping, tracking health, and talking with providers) of the the Transition Readiness Assessment Questionnaire (TRAQ). Responses were collasped into two categories, yes/no, for each item and summed to create scale scores. We conducted MANOVA models predicting transition readiness by YSHCN status and demographics as potential covariates. Results: YSHCN scored significantly higher than youth without SHCN on all four measures of transition readiness (p<.01). In multivariate analyses YSHCN (versus other youth) had significantly greater transition readiness for the four subscales: F(4, 401= 5.36, p<.001), controlling for age. Table 1 displays overall and group means, and p-value for the TRAQ subscales. Conclusion(s): Rural YSHCN scored higher on the scale, perhaps due to their increased exposure to the health care system. Readiness skills for the transition to adult health are necessary for all youth however, findings from this study suggest that many rural youth—particularly those often thought of as “healthy”—may not be fully prepared for this transition. Findings point to the need for the development of interventions to help all youth effectively make transition to adult healthcare

Background: Professional guidelines recommend that all adolescents receive annual preventive visits including psychosocial and behavioral screening, and anticipatory guidance and counseling for health risk behaviors. Youth with special health care needs (YSHCN) experience many health-related disparities yet little is known about receipt of such counseling this population. Objective: We characterized adolescents’ receipt of recommended healthcare provider-delivered counseling and assessed differences between youth with and without special health care needs. Design/Methods: We used data from a 2016 school-based survey of adolescents ages 16-18 in rural South Central Appalachia Tennessee (n=403). About one-quarter (23%) were categorized as YSHCN. A greater proportion of YSHCN were female (68% vs. 49%), non-Hispanic white (96% vs. 83%), or had seen a doctor or other healthcare provider in the past year (97% vs. 83%) (all p<.05). Adolescents reported on their discussions with a healthcare provider about ten different recommended topics across four areas: weight/physical activity; mental health; substance use; and protective factors (i.e., friends, school). We assessed differences in individual topics discussed by YSHCN status using chi-square analyses and multivariable logistic regression. Results: Overall, only half (50%) of adolescents reported talking with their healthcare provider about any of the assessed topics. As shown in Figure 1, receipt of counseling varied by YSHCN status with a greater proportion of YSHCN reporting having discussed most of the assessed topics with a healthcare provider compared to other youth. In multivariable models controlling for adolescents’ sex, age, race/ethnicity, SES, use of health services, and quality of a relationship with their healthcare provider, YSHCN had greater odds than other youth of discussing topics related to weight/physical activity (OR=4.08, 95% CI: 2.35-7.07); mental health (OR=2.50, 95%CI: 1.46-4.31); protective factors (OR=2.32, 95% CI: 1.29-4.18); but not substance use (p>.05). Conclusion(s): This study provides novel data on receipt of healthcare provider-delivered counseling about important health risk and promotion topics. Findings suggest that YSHCN are more likely than other youth to receive counseling about most topics, even when controlling for their increased receipt of preventive care. However, findings also highlight suboptimal provision of anticipatory guidance to all youth, and point to the need to increase delivery of adolescent preventive servcies.

Epidemiologic surveillance indicates an increased susceptibility to obesity among children with special health care needs (SHCN) in comparison to children without. The present study investigated this disparity in weight severity between both groups, with a focus on the provision of obesity management counseling by physicians. This study consisted of a retrospective medical record review that acknowledged the effect of patient-provider interactions on health behaviors and risk perceptions. An independent sample t test compared the incidence of clinician-initiated obesity management counseling received by children with SHCN to that which was received by children without SHCN. This t test revealed a statistically significant difference between the weight management frequency received by youth with SHCN (M = 1.0, SD =.46498) and the weight management frequency received by youth without SHCN (M = 2.0, SD = .74975), t(100) = 7.826, p = .000, α =.05 over a 2-year timeframe. Bivariate correlation analysis validated a correlation between weight severity among children with SHCN and the incidence of clinician-initiated obesity management counseling. The results indicated a small but significant association between weight severity and weight management frequency among children with SHCN, r(50) = .287, p = .044, α =.05. These results support the need for a transformation in the delivery of preventive health services for children with SHCN, such as providing clinician-based obesity management strategies and increasing access to validated diagnosis-specific preventive health screening tools. These results promote positive social change by informing efforts to improve health outcomes and decrease health disparities experienced by people with SHCN.

Families of children with special health care needs (CSHCN) and disabilities who lived in rural communities faced a variety of economic, social, and environmental challenges. Bronfenbrenner (1979, 2005) in his Bioecological Theory of Human Development offered an insightful lens for understanding the nested environments in which these families interact. This model was used as the overarching framework for this dissertation. The three manuscripts contained in this dissertation have included analyses of the involvement and participation of families of CSHCN and disabilities in the creation of a medical home located in a rural southwestern border community. These studies were critical for the medical home professionals - family involvement was at the core of the medical home philosophy. The overarching purpose of this dissertation was to set the foundation for successful family participation and feedback in the medical home. Within the first manuscript, I used the Medical Home Family Index to discover families’ (a) perceptions of interactions with medical professionals and (b) ratings of the quality of care within the medical home. Families of CSHCN (N = 92) completed the Medical Home Family Index and descriptive statistics as well as Chi-Square analyses were completed. Significant associations between families’ home languages and the amount of time the CSHCN had been receiving services at the medical home and the families’ responses were found. No associations between the children’s ages and the families’ responses were found. Recommendations for medical home professionals to complete the partner index, the Medical Home Index, were included. The purpose of the second manuscript was to examine the support needs of families of CSHCN and disabilities. Relationships between the severity of the children’s special health care needs and disabilities and the potential services they required were explored. For this study, a small sample (N = 25) of families of CSHCN completed the Family Needs section of the Center for Medical Home Improvement Family Survey, an in-depth, five-part survey designed to have families report on the services and supports that their CSHCN actually received. Families of CSHCN identified the need for therapies to be provided within the community. Findings from this study supported the creation of a pilot program in which parents were active participants in an intensive summer program designed to address the language and communication needs of their children. The purposes of the third manuscript were to (a) conduct research in two settings - a rural medical home and the families’ natural environments, (b) identify families’ perceptions of a targeted summer language intervention program, and (c) determine what changes in young children’s communication skills could be measured when parents were active members in a targeted summer language intervention program. For the third study, fourteen children with language delays and their families participated. Children were assessed using the Battelle Developmental Inventory-2nd Edition or the Preschool Language Scale-4th Edition. Intervention was conducted within a pediatric medical home and families continued the intervention at home. For both test results, the treatment had a significant effect. All families indicated a strong desire to continue the program and families who were most concerned with their children’s language were most satisfied with the program. This pilot program model was an example of ways that interventions could be extended successfully beyond traditional settings.

Background/Aim: During the past two decades, major advances in maternal-fetal medicine, neonatology, and the development of regionalized perinatal care have resulted in dramatic increases in survival rates, by more than 60%, of extremely immature (EI) infants born at less than 26 completed weeks of gestation, creating a new infant population. Studies of school-age outcomes in children with an extremely low birth weight of &lt; 1000 g, born in the1980s, indicated that these children had a substantially high prevalence of low-severity neuropsychological deficits, behavioral problems, and difficulties at school. Information on school-age outcomes of extremely preterm children born in the 1990s is sparse, and mainly restricted to the neurobehavioral and developmental outcome. The aim of this research was to investigate the comprehensive neurological, developmental, functional, and mental health status and health care needs of children born at 23-25 weeks of gestation in the 1990s, allowing a total view of the child in the context of the family, his peers, school, and the health care system. The ultimate aim was to obtain a clearer understanding of the functional capacities of these vulnerable children and the possibilities of ameliorative interventions, as a basis for planning and provision of services for this growing population. Methods: We studied 11-year-old children born from 1990 through 1992 before 26 completed weeks of gestation in all of Sweden. All had been evaluated at a corrected age of 36 months. Of 89 eligible children, 86 (97%) were studied at a mean age of 11 years. An equal number of children born at term served as controls. The following methods were used: 1) well validated, mailed questionnaires filled out by the parents, class teachers and the children themselves; 2) structured interviews were conducted with a parent or a primary caregiver; 3) review of pediatric case records and records from other specialist health care services; and 4) anthropometric measurements (length, weight, head circumference and body mass index) from birth to 11 years of age. The following domains were explored: current health status, growth attainment, mental health assessment, emotional well-being, adaptive functioning and social competencies, school performance, executive functions, and learning and language skills. Relations of socioeconomic background and of environmental and perinatal risk factors to the long-term outcome were evaluated. Results: EI children compared with the controls had significantly higher rates of specific diagnoses or disabilities including neurosensory impairment (15% vs 2%, respectively), asthma (20% vs 6%), poor motor skills (26% vs 3%), poor visual perception (21% vs 4%), poor learning skills (27% vs 3%),poor adaptive functioning (42% vs 9%), and poor academic performance (49% vs 7%). As a consequence of these disabilities, significantly more EI children than controls had chronic conditions, which included functional limitations (64% vs 11%), compensatory dependency needs (59% vs 25%), and services above those routinely required by children in general (67% vs 22%). Regarding growth attainment, EI children had significantly lower values for all three growth parameters (length, weight and head circumference) than the controls at 11 years. They showed a sharp decline in weight and height z scores up to 3 months’ corrected age, followed by good catch-up growth in both weight and height up to 11 years. EI children did not exhibit catch-up growth in head circumference after the first 6 months of life. Preterm birth and parental height were significant predictors of 11-year height, and group status (prematurity) correlated strongly with head circumference. Our results also suggest that the EI children had a significantly greater risk for poorer mental health and poorer emotional well-being than the control participants, including internalizing (anxiety/depression, withdrawn behavior and somatic complaints), and attention, social, and thought problems. No differences in externalizing problems were found between the EI cohort and controls. Multivariable analyses disclosed a number of significant predictors of behavioral adjustment: group status (EI vs control), family function, social risk, male gender, and presence of a chronic medical condition. Concerning school performance, more than half (59%) of our EI cohort were experiencing school difficulties and 15%, compared with 5% of the control children were attending special schools or having full-time special education. Despite fewer adaptive skills in the EI cohort these children were not different from the controls in respect to being happy and being positively adjusted in their day-to-day life. Compared with controls, EI children had a significantly increased risk for executive dysfunctions in most of the areas assessed (Attention control and Attention switching, Hypoactivity, Planning/organizing, and Working memory). EI children were also at increased risk for deficient skills in language tasks (comprehension, communication, and expression) and in the four standard measures of learning skills (reading/writing, math, general learning, and coping in learning). However, only a relatively small number of EI children exhibited severe impairments in executive or non-executive skills. Multivariate analyses revealed that prematurity, executive dysfunction and male gender were associated with poor learning skills. Conclusions and implications: Children born extremely immature have significantly greater health problems and special health care needs that require ongoing services through the school years. However, it is notable that very few children have severe impairments that curtail major activities of daily living. The overall results of this study are reassuring. Despite having an increased risk for mental health problems, executive dysfunctions and school difficulties, 85% of the EI children were in the mainstream schools and a majority were not having major adjustment difficulties. In terms of growth, most of our EI children showed good catch-up in late childhood and were within 2SD of their mean midparental height at 11 years of age. Although biological immaturity is associated with an increased risk for a substantial number of behavioral/emotional problems, improvement of the modifiable environmental factors will benefit the outcome in EI children. We also believe that knowledge of the course of development of psychopathological conditions from early childhood to adolescence and beyond is crucial for identifying the need for intervention and prevention strategies. Thus when there is evidence to suggest neuropsychological and behavioral or emotional problems, early identification and preventive measures might help families to manage these from an early stage. Our findings further suggest that current preterm follow-up programs might benefit from the addition of psychological and family services to traditional neurodevelopmental assessments, especially in the neonatal period and first years of life.

Serving children with special health care needs (SHCN) or developmental disabilities (DD) and their families is an important public health issue (Healthy People, 2020). The prevalence of children with special health care needs or developmental disabilities is significant and increasing (Boyle et al., 2011). Caregivers of children with SHCN or DD and their families demand clinical and research attention given the potential range of health and well-being outcomes that are associated with their children’s developmental or medical complexity. The purpose of this dissertation study was to use a quantitative descriptive research design to examine the experiences of pediatric parenting stress and family support for a sample of caregivers of children representing diverse special health care needs or developmental disabilities. Data were collected at four agencies that provide a range of services to children with SHCN or DD and their families. The data for 167 caregiver participants were used for the preliminary and main statistical analyses. Statistical analyses including pearson product moment correlations, independent-samples t-tests, one-way analysis of variance (ANOVA) tests, internal consistency reliability analyses, and factor analyses. Present study findings revealed that (a) the Pediatric Inventory for Parents (PIP) and Family Support Scale (FSS) measures did not appear to be internally consistent for this study sample; (b) the existing PIP and FSS factor structures did not fit the present study data well; (c) the present study sample had higher levels of pediatric parenting stress and lower levels of family support overall as compared to previous study samples of caregivers for children with chronic conditions; (d) the current study sample’s experiences of pediatric parenting stress and family support differed significantly by several caregiver, child, and family correlates; and (e) the current study sample’s levels of pediatric parenting stress and family support had a positive, significant association. Study findings emphasized the potential roles of stress and support in the caregiving experiences for children with SHCN or DD. Recommendations for further study of this caregiving population and their families are discussed.

Background: Health care transition (HCT) for adolescents and emerging adults (AEA) with special health care needs is an emerging field of interdisciplinary field of practice and research that is based upon an intergenerational approach involving care coordination between pediatric and adult systems of health care. Informed understanding of the state of the HCT science pertaining to this group of providers is needed in order to develop and implement service programs that will meet the comprehensive needs of AEA with special health care needs. Methods: The authors conducted a systematic review of the literature on the transition from child to adult care for adolescents and emerging adults (AEA) with special health care needs from 2004 to 2013. Fifty-five articles were selected for this review. An adaptation of the PRISMA guidelines was applied because all studies in this review used descriptive designs. Results: Findings revealed lack of evidence due to the limitations of the research designs and methodology of the studies included in this systematic review. Study findings were categorized the following four types: adult provider competency, provider perspectives, provider attitudes, and HCT service models. The discipline of medicine was predominant; interdisciplinary frameworks based upon integrated care were not reported. Few studies included samples of adult providers. Conclusions: Empirical-based data are lacking pertaining to the role of providers involved in this specialty area of practice. Evidence is hampered by the limitations of the lack of rigorous research designs and methodology.